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Still, everyone at ATPC has an individual program designed to keep residents as active as possible. Many spend their days at work (some go off-campus, others work piecemeal in a program designed for them to earn money) or at retirement programs specially designed for their needs.
After work, they receive therapy. At meal times, they are served food prepared for them by a master chef from New York City. They have wheelchairs specially adapted on-site for any individual who needs one. The services are hard to get and expensive for people living in community settings.
Many of ATPC's employees have been there 30-plus years, and the clients have known each other their entire lives. They have friendships that are easy to observe, even on a casual tour of the grounds.
On a tour that lasted more than three hours, it was clear that nothing about the place feels dark, scary, or institutional.
Though 70 percent of the Coolidge residents have family members actively involved in decisions about their care, moving back into the family home would put an incredible burden on parents who are in the process of figuring out their own end-of-life needs.
Blinda Mills — the older sister of the Arrington twins and Darla Kay — says she's sure her mother would be dead if not for ATPC's help.
"I doubt she would be alive because of the strain," she says.
Mills knows what the facility's closure could mean for her family: She'd have to quit her job as a special education teacher and move back in with her mother to help out. The state would have to pay for round-the-clock nursing care and renovate the house to accommodate the three disabled Arringtons, all of whom are in wheelchairs, require several hours of physical therapy each day, and are fed through G-tubes surgically placed in their stomachs. They also require almost constant stretching and physical therapy because of the crippling effect of cerebral palsy on their bodies.
Aside from the stress to her and her elderly mother, Blinda worries about what would happen to her siblings and other residents at ATPC. (They would bring their family members home, Blinda says. They don't trust other options.)
"It would be like a divorce or a death in the family for them," she says. "When you have been somewhere 50 years, that is your home. They know the grounds. They know the people. It makes me so mad. They're not cattle that you move from one pasture to the next."
At the time Fay Arrington's children were born, in the '40s and '50s, a disabled child was someone to be hidden from the community. Institutions were a big industry — in 1940, there were 100,000 people in state-run institutions around the country. By 1960, that number had doubled.
Families with disabled children had to foot the bill for the children's care. Arrington had to pay for her children to stay at Coolidge until they were 19. There was no AHCCCS or state budget for long-term care.
Willard Abraham, an education professor at ASU in the 1950s who focused on teaching both gifted and disabled children, wrote in his book Barbara: A Prologue about having a baby with Down syndrome.
The book was written as a love letter and explanation to his late daughter, whom he institutionalized shortly after her birth, and dedicated to the "thousands of ill-finished children of generations to come." Abraham, who, ironically, worked with children at the Arizona Children's Colony (he even may have known the Arrington twins), agonized over his decision to institutionalize his daughter.
The book brings the mindset of the time sharply into focus: The family views this child as an utter tragedy. The mother cannot cope with the thought of a mentally retarded daughter. Abraham, an expert and well-educated man, never once calls his daughter's condition Down syndrome in the book — it's "mongoloidism" to him and his contemporaries.
Doctors offer Abraham advice that's shocking to the modern ear, but was considered normal at the time. A friend, then the director of the Arizona Children's Colony, tells him, "I always feel bad when parents are separated from their babies. Mongoloid children are so lovable and easy to get along with . . . [but] the time comes when institutions are better places for them to be."
Abraham and his wife did send their infant daughter to Valley of the Sun, a Phoenix facility, where she died of heart failure four months later. Heart problems are common for children with Down syndrome, and if Barbara had been born today, there's a good chance doctors might have been able to detect a defect and save her. Not so in the early 1950s.
Even families who were financially able to take care of their disabled children were encouraged to send them away. The late playwright Arthur Miller had a son, Daniel, who has Down syndrome and was institutionalized in upstate New York for years. Miller apparently never mentioned or wrote about his son, according to an article published last year in Vanity Fair. It was as if he never existed. (Daniel's mother, Inge, did visit often.)